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Development of a web-based register for the Dutch national study on biologicals in juvenile idiopathic arthritis:

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Pediatric Rheumatology20086 (Suppl 1) :P153

  • Published:


  • Multicentre Study
  • Juvenile Idiopathic Arthritis
  • Patient Data
  • Internal Validity
  • Collaborative Study


Most clinical studies use paper case record forms (CRFs) to collect data. In the Dutch multicentre observational study on biologicals we encountered several disadvantages of using the paper CRFs. These are delay in data collection, lack of overview in collected data, and difficulties in obtaining up-to-date interim reports. Therefore we wanted to create a more effective method of data collection compared to CRFs on paper in a multicentre study.


We designed a web-based register with the intention to make it easy to use for participating physicians and at the same time accurate and up-to-date. Security demands were taken into account to secure the safety of the patient data.


The web-based register was tested with data from 161 juvenile idiopathic arthritis patients from nine different centres. Internal validity was obtained and user-friendliness guaranteed. To secure the completeness of the data automatically generated email alerts were implemented into the web-based register. More transparency of data was achieved by including the option to automatically generate interim reports of data in the web-based register. The safety was tested and approved.


By digitalizing the CRF we achieved our aim to provide easy, rapid and safe access to the database and contributed to a new way of data collection. Although the web-based register was designed for the current multicentre observational study, this type of instrument can also be applied to other types of studies. We expect that especially collaborative study groups will find it an efficient tool to collect data.

Authors’ Affiliations

Erasmus MC Sophia Children's Hospital, Rotterdam, Netherlands
UMCG Beatrix Children's Hospital, Groningen, Netherlands
Leiden University Medical Centre, Leiden, Netherlands
Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands
Hagaziekenhuis Juliana Children's Hospital, Den Haag, Netherlands
AMC Emma Children's Hospital, Amsterdam, Netherlands
Academic Hospital Maastricht, Maastricht, Netherlands


© Prince et al; licensee BioMed Central Ltd. 2008

This article is published under license to BioMed Central Ltd.